This video was created by Jack Nunn on 11 October 2020, a recording of a presentation given for La Trobe University titled 'Genomics Research and Involving People’.
The associated resource can be found at this link: https://doi.org/10.26181/5f85314c7d124
This video is licensed under Creative Commons Attribution-Non-Commercial 4.0 International (CC BY-NC 4.0). Contact Jack.Nunn@latrobe.edu.au.
“No sensible decision can be made any longer without taking into account not only the world as it is, but the world as it will be...” (Isaac Asimov) 2
By 2025, it is estimated that nearly 2 billion people worldwide will have had their DNA sequenced, creating a global imperative for responsible and effective public involvement in research3. I started researching this area in 2012 and since then at least 14 countries have invested over US$4 billion to establish national genomic-medicine initiatives4. I started my PhD in 2016; here are three things which have happened since then:
• October 2017: Genomic medicine integrated into healthcare in countries across the world, improving diagnosis and treatment for millions of people, and the UK Biobank opens data associated with 500,000 genomes to all ‘all bona fide health researchers’5,6
• November 2018: The human genome has been edited for the first time, a decision widely condemned as unethical7,8
• April 2019: A serial killer was found by law enforcement employees in the USA using ‘GEDmatch’9 (a database of people sharing their own DNA information), the website has since been bought by a private company10. The Electronic Frontier Foundation said ‘We need to think long and hard as a society about whether law enforcement should be allowed to access genetic genealogy databases at all’11
Is genomics research different from other research?
In a recent global survey most people viewed DNA data as different from other medical data and most people were willing to donate DNA data when the recipient was specified as a ‘medical doctor’ and least willing when the recipient was a ‘for-profit researcher’15
Contact Jack.Nunn@latrobe.edu.au or Twitter: @JackNunn. Orcid.org/0000-0003-0316-3254
This document was created by Jack Nunn on 7th October 2020. This document is licensed under Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).
Genomics and other biomedical research present specific social, ethical and legal challenges, such as the communication and commercialization of research results, the balancing of individual rights against the collective good, and data protection.
‘To address these challenges, leading international institutions stress the importance of public involvement in biomedical research and innovation’ 12(p2).
In order for genomic research to be successful, it needs to be supported by the public (both for funding decisions and decision to participate)13
In a study in 2016, 80.30% of people who had shared their genomic data said they did so in order to contribute to the advancement of medical research 14(p1).
By involving the public in shaping genomic research, we can create research which is more likely to benefit more people 16(p6).
The way in which data is shared must therefore be developed with participants from the outset of any study which collects genomic data17.
There is a critical need to involve people in genomics research during this phase, in particular to protect vulnerable people from exploitation.3,18
What’s the problem?
• There is no clear methodology or evidence base for informing best-practice when involving people in genomics research3.
• Genomics research is global and needs to work across populations and multiple human languages, so evidence of best practice for involvement needs to work across these same boundaries.